12 yr old new to Crohn's

[mikayla]

Mikayla, our precious 12 yr old baby girl was diagnosed with Crohn's disease in December. She swallowed a pill camera in November that revealed inflammation in her small intestine. She continues with health issues so the Dr wanted to get a look at her intestines again. Last Friday she swallowed another pill camera to see if the intestines were healing. On Sunday, the pill got stuck in the inflamed intestine and had emergency surgery remove it Sunday night. They also removed her appendix.

Since then there has been many complications. The biggest one is C-diff. Mikayla has been having horrible uncontrollable diarrhea since Wednesday. Her fevers have been 103.5 for 3 nights. Last night it got up to 101. Praise God!

She had a ct scan yesterday to rule out leakage and blockage. They did find a abscess and are treating that too with antibiotics.

When I talked to her GI doctor last night and asked if we were on the “upswing” on this thing…..she responded that we were in the “middle”. Mikayla’s intestines need to heal and they are under attack right now.


What do I do with her with a diet during an attack? What are good food options?
The hospital is clueless to her needs. We have been bringing in food for her.

SO thankful for this website!
Blessings, Miks MOM

 

[LilyRose]

Hi Mikayla,

I am so sorry to hear your lovely daughter is going through all this. She is obviously having a rough time time. And it is so hard as a Mum to see your child going through difficult time like this.

I can't give you any advice on diet, I'm sorry. Does the hospital have a dietician, or can a dietician attend and recommend what would be the best for her at the moment?

Let us know how things are going. I hope it won't be long until you are on the 'upswing'.

Take care of yourself too at this time.

Best wishes,
LilyRose

 

[scottmyster]

Hi Mikayla, Welcome to the forum but, not under the present circumstances. the diet is tricky because you don't what will flare it up her inflammation, i have had it for about 20 years now and when i have a flare up i stick to liquids you can start her on some gatoraid to keep her hydrated and start introducing small amounts of liquids like consume, chicken broth and beef broth, jello basicaly any thing that is liquid based and Preferably anything that is clear. hope this helps almost for got if she tolerate it you can give ensure or boost or any nutritional drinks to keep her stamina up.

scott

 

[Sascot]

Sorry to hear about your daughter, I hope she starts feeling better soon. Sorry not much advice on diet - we were told to let my son eat anything. However, I do always cook veg instead of having raw, peel apples or anything with a tough skin, no fizzy juice, nothing too spicy and white bread instead of brown.
Good luck with her recovery!

 

[Kip1]

Hi Miks mom

I have no advice but just wanted to say you & your daughter are in my thoughts & I hope the "upswing" comes quickly for you.

You are in my prayers.

 

[Tenacity]

Hi Mikayla,

I am so sorry that your daughter has been diagnosed with crohns and is going through such a hard time.

I just want to offer my advice with regards to your question about nutrition. If her intestines are very inflammed, I would strongly suggest that you feed her an exclusive elemental diet. We have a section in this forum that specifically addresses this form of treatment, which is especially effective for children.

http://www.crohnsforum.com/forumdisplay.php?f=161

It has been proven to be just as effective as taking Prednisone. Until they can get you set up, you can offer her elemental drinks such as Peptamen Junior. Ask your doctor to write a script for you, or have them deliver some to the room. I would feed her an exclusive elemental diet for a few weeks.

These drinks have been specially formulated for children aged 1 - 13 who are gastro-impaired. It is not the same as Boost and Ensure etc. It will give your daughter the vital nutrition she needs and also aid in her growth.

Just know that we are all here for you anytime - if you have any questions, let us know. Good luck, and don't forget to take care of yourself too!

 

[crohnsinct]

Welcome Mik's mom although I am sorry you have to be here and under such a stressful situation. I am glad you found your way here as there are some wonderful and knowledgeable parents here.

As for diet, I second Enteral Nutrition. This is where they get all their nutrition from a formula. It could be delivered via an ng tube or she can drink the shakes. My daughter did 6 weeks exclusive shakes and used the Boost and Ensure and it worked for her although I understand there are other formulas that are more readily absorbed. EN will have two benefits for you...nutrition and it helps reduce inflammation and get the flare under control...some say just as good as steroids. For more information there is a Kids with EN thread here in the Parents Forum...I encourage you to check it out and discuss it with your doc.

Also, when my daughter was in the hospital they put her on a low residue diet and she stayed on that diet for awhile after discharge. You could google it but it is basically all the stuff you usually try to stay away from...all low fiber...white bread etc. I am surprised the doc and hospital haven't mentioned it to you as it seems pretty standard in GI cases in the hospitals here.

What are they doing for her inflammation in the way of meds?

I hope she feels better super soon!

 

[jmckinley]

So sorry to hear about the hard time your daughter (and your family) are going through. You have lots of people on here that understand.

I would seriously look into the EN thing! It's not super easy, but it does work! They get tired of the drinks...take it from us. We are supposed to be drinking them now. But it is worth the effort. It provides the nutrition they need and lets the gut rest.

If you don't go that route, the "low residue" thing is the other choice. chicken soup, white potatoes, bananas, white bread, low fiber, overcook veggies, nothing raw or high in fiber.

Let us know how it is going and good luck! Let's get over that hump!

 

[DustyKat]

Hi mikayla and :welcome:

I'm so very sorry to hear about your precious girl, bless her, and to have C Diff on top of everything else!

You have been given excellent advice hun and I agree with the two suggestions offered...EN or low residue...EN would be the first choice if it is at possible to go down that route. Your daughter's bowel certainly does need a beak from all it has been and continues to go through and EN would provide that through nutrition, healing and pain relief. For some on EN BM's will remain loose but vastly different to what your girl is experiencing now.

Good luck hun, my thoughts are with you. :hug:

Dusty. xxx

 

[Farmwife]

Hi,
Sorry to here about all the problems. My little three year farmgirl has had c. diff. That's what kicked all this crohn's "stuff" off.
I hope she starts the up swing soon.

Farmwife

 

[mikayla]

Thank you everyone. Our baby girl is home recovering. I talked to her Dr about EN and she said that they don't have access to that. (we are seen at a Naval Hospital) I guess I am confused....what exactly is EN? Is it giving with a feeding tube? I am looking into changing my insurance and going to a Crohns specialty clinic here in San Diego, CA.
How do you post the meds you are taking. I see that at the end of everyone's post!

 

[my little penguin]

EN is enteral nutrition.
YOu can do this orally (kiddo drinks it all) or by NG tube.

A doc can prescribe it in which case your insurance may cover some , all or none of it. If the GI writes a script have them send it through a durable medical supply place. (DME). Most insurances have DME clauses and will cover x% of the formula this way but not as a true prescription.

You can order it yourself from nestle nutrition or abbott or neocate.

For EN to be effective your doc needs to tell you how much your kiddo needs to drink. Most stay on formula only for 6- 8 weeks no other food.

Here are the links to the EN sites:
http://www.nestlenutritionstore.com...-1?rank=8&v1=rank&asc=1&catpath=pediatric.2.2

https://www.neocate.com/shop/p-24-e028-splash.aspx?

http://abbottnutrition.com/Child/Childrens-Formula.aspx

To be truly EN the formula should be Peptide or amino acid based since this does not require the body to break things down and only needs a few inches of small intestine healthy to absorb it.:thumright:

 

[DustyKat]

mlp has EN covered...:thumleft:

As to the med listing...go to the blue tool bar under the Crohn's forum logo...click on settings...a menu will appear on the left hand side of the page...scroll down to the third heading Settings and Options...the second option is edit signature...click on that and add what info you want.

This will then become your signature and it will appear on the first post you submit on each page of a thread.

Dusty.

 

[mikayla]

Hi Mikayla, Welcome to the forum but, not under the present circumstances. the diet is tricky because you don't what will flare it up her inflammation, i have had it for about 20 years now and when i have a flare up i stick to liquids you can start her on some gatoraid to keep her hydrated and start introducing small amounts of liquids like consume, chicken broth and beef broth, jello basicaly any thing that is liquid based and Preferably anything that is clear. hope this helps almost for got if she tolerate it you can give ensure or boost or any nutritional drinks to keep her stamina up.

scott

THanks. How long do you stay on liquids during flare up?

 

[mikayla]

THanks for all your insight and suggestions! She got released from the hospital after 9 days. Home for 7 days and now back in the hospital. CT scan showed blockage, where the pill camera was stuck. Inflamed area. When she got home she was on a simple diet. Canned fruit, mac n cheese (which doesn't affect her), then we introduced bread and it was down hill. Vomiting, vomiting, vomiting! Called the Dr and she said liquids only and Ensure. Mik fought me on Ensure, but finally took it and three hours later, doubled over in pain vomited the Ensure. We went back to hospital for x-ray that showed something in there that wasn't right. The Dr said no surgery YET, but two more days in hospital to make sure she can tolerate liquids. After discharge, STRICT Ensure diet for 4 weeks. She is SCREAMING!!!! In 1.5 weeks we can start Remicade. The Drs said Remicade can not start until 4 weeks after post op. She is depressed, crying and feels NOT normal! I feel like a failure as a mom! The diet is so different for everyone. As I read everyone's stories, we are all struggling with this! Thoughts and prayers to you all who have dealt with this for years....we are three years into this un-diagnosed and 7 months with Crohns! UGH!

 

[dannysmom]

Hi. Sorry things are so bad right now. I hope you can find some liquid nutrition that is not seems so bad for Mikayla ... or that she gets used to it more. Your comment "un-diagnosed for 3 years" is where I am at now with my son. I really hope the Remicade helps you daughter like it has helped so many others.

 

[mikayla]

Hi. Sorry things are so bad right now. I hope you can find some liquid nutrition that is not seems so bad for Mikayla ... or that she gets used to it more. Your comment "un-diagnosed for 3 years" is where I am at now with my son. I really hope the Remicade helps you daughter like it has helped so many others.

UGH~! Why is this so frustrating. I am so sorry your son hasn't been diagnosed. How are you relieving his pain? Sounds like everyone's answer on this forum is Ensure or EN. My daughter is dreading not eating for the next month. I told her I would go on a liquid diet too. She needs to gain 20 lbs and I need to loose 20 lbs. Win, win!! I hope you get answers for your son too. My thoughts and prayers are with you!
Mik's Mom:rosette1::rosette1:

 

[Snoflayk505]

So sorry to hear how hard a time your baby girl is having. It's tough when our babies our sick I hope you can find the help and comfort you and your family needs on this forum.

As for diet, when i flare not much feels good going down I usually try and stick to a liquid diet or pureed diet if it is super super bad. A flare is very individual, it depends on the persons body whether


Good old fashioned Homemade chicken soup
- Soup is a great way to get nutrition. When our veggies are cooked in water, lots of the nutrition goes into the liquid its cooked in (the broth). Homemade is best. I use carrots, white onions, zucchini, celery and a little spinach. Even if you feel she is past soup, I would still throw it in her diet as much as possible for the nutrition.

Pureed Cauliflower or broccoli soup. just saute onions and garlic until almost browned, then add a few cups of water and caulifower or broccoli. Cook until veggies are super soft then puree. You can add cheese too if she can tolerate it.

Maybe a pureed sweet potatoe and carrot soup too? Soup is so nutritious, I would expiriment.

Eggs, chicken, hamburger patties (some have intolerance to beef during a flare) shouldnt be too bad

NO FISH
Fish slows wound healing

Nothing with skins or seeds and no raw fruits or veggies. Some people can do veggies cooked soft but carrots ALWAYS hurt me during a flare fyi.

In some people dairy is an issue but unfortunately, it is trial and error. If something does not agree with me I will know either by 2-4 hours or the next day. Make sure and try new things one at a time so you know what she cant tolerate during a flare.

*Just because it hurts her while inflammation is present, does not mean it will hurt her when she is in remission.

I hope these little tips help. These are just things I would follow when I would flare. Good luck and I hope she has a speedy recovery <3

 

[Snoflayk505]

I almost forgot! My toddler and I still drink these every single day cuz its like a milk shake without the milk! (dairy is a no no to so many including me)

banana, ice, and a little water - blend and enjoy! I also throw in a scoop of PB in too. If she can tolerate it I would try the PB for her second shake so you know its the pb if she doesnt tolerate it. Sweeten with a little honey if she wants it sweeter

She might really enjoy some smoothies (only sweeten with honey). They would comfort me so much when I couldnt eat.

Try peach and banana or if its a fruit with seeds strain it first. Experiment

 

[dannysmom]

UGH~! Why is this so frustrating. I am so sorry your son hasn't been diagnosed. How are you relieving his pain? Sounds like everyone's answer on this forum is Ensure or EN. My daughter is dreading not eating for the next month. I told her I would go on a liquid diet too. She needs to gain 20 lbs and I need to loose 20 lbs. Win, win!! I hope you get answers for your son too. My thoughts and prayers are with you!
Mik's Mom:rosette1::rosette1:

Thanks. Luckily Danny's pain is mild/moderate and not severe because we have not found anything to relieve it ... including his headache. We tried to go EN ... but the drinks that tasted OK contained casseine which he is allergic to and felt it right away. He just could not tolerate drinking the real elemental drinks. He also has not had any weight loss issues (lucky again) ... so using a tube for feeding seemed a bit extreme at our last discussion with the GI. We see his GI again next week.

Thanks & good luck to you!

 

[my little penguin]

E028 splash "juice" boxes are not that bad.
THey also have chocolate and vanilla flavored
YOu can buy flavor packets from Nutrica

https://www.neocate.com/shop/c-6-nutricia-category.aspx

http://www.shsna.com/pages/flavor_packets.htm

these help.

plus others have used kool aid packets and a little sugar in a pinch if its not sole nutrition.


WE use peptamen jr with prebio here

http://www.nestlenutritionstore.com...R-PREBIO-1-Vanilla&utm_campaign=Product-Pages

DS drinks it orally.


There is another amino acid version from elecare- again chic vanilla etc...
http://www.abbottstore.com/therapeutic-nutrition/elecare/icat/elecare&source=ele


all of the companies or your go can give you samples to try.:thumleft:

the broken down formulas are easier on stomachs and gI tracts